I’m writing my final blog post from back in my office at MDA National Headquarters in Tucson, where I just finished assigning reviewers to our last batch of grant applications for the upcoming round of reviews — the work never ends!
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OK. I admit it. I have lived my entire adult life as an “anti-clinic-er.” “What?” you’re thinking to yourself. “You mean to tell me that I’m following the blog of a woman at MDA’s National Clinical Conference who doesn’t go to clinic???” Yes … it’s completely true. But WAIT — let me explain myself before you click to the page of a more reputable and trustworthy blogger.
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Today kicked off with a bang as Angela Wrigglesworth took to the stage and shared her experiences and triumphs with us. In relaying how, when she was a child, her clinician used to talk to her about life with SMA using his best Donald Duck impersonation, she taught a room full of doctors what it means to speak to a patient at their level.
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Annie Kennedy presented this afternoon about a topic that is near and dear to my heart — transitions and the role that advocacy has played at MDA in recent years. 1. There is truly an Advocacy Movement within MDA — a cultural shift in which the organization is listening to the voices of young adults who are aging and dealing with issues that have not been addressed before.
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Ok, I’m finished with confessions and science lessons (at least for today). The last three talks of today’s morning session shifted the conversation from disease research to MDA clinics. And trust me, while Dr. Appel’s talk was about good guys and bad guys, these latter talks shined light squarely on the good guys!
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Right now I am desperately attempting to understand a lecture about Peripheral T Cell Tolerance. Each of those words I can define individually. Peripheral — along the edge; T — the 20th letter of the alphabet and possibly my personal favorite of the 26; Cell — one of those tiny little guys that has a nucleus and is pretty much the superstar of this conference; and Tolerance — a principle that I try to instill in my students ...
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Today started out with butterflies in my stomach that had nothing to do with the breakfast buffet. I’m typically not the nervous type, but I awoke early this morning all too aware that in a short time, I would be addressing the conference participants.
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We had another really interesting session this afternoon, and one that highlighted to me just how far we have come. Several people talked about how patients’ disease course is different now than it was in the past. We also got to talk about “transitions” — what happens to people with pediatric diseases as they grow into adulthood? What a great issue to have to discuss!
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Confession number (where were we?) four:
Immunology was not my strongest subject in college.
Vance and Angela, if you didn’t catch all the science in the morning session … please don’t ask me to help you. What I can say is that I’m incredibly gratified that the neuromuscular community has wonderful and brilliant scientists like Carrie Miceli, Stan Appel, Richard Barohn, and Steve Greenberg, who understand the immune system intimately. Their talks this morning demonstrated how critical the immune system is, both to the underpinnings of many of the diseases we care about, as well as to the therapies being developed by our researchers.
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Let’s just say that the last session has made me totally cognizant of my breathing. Dr. Lisa Wolfe from Chicago discussed the topic of pulmonology and I’m already breathing easier. I learned a great deal and was interested in several things in particular:
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This afternoon at the meeting was really inspiring to me! It focused on all the things that we CAN do for patients with neuromuscular diseases (NMDs). I spend much of my life in a world of drug development, where progress, however exciting, can seem slow. However, there is so much that we already can do for patients.
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What do you picture when you hear someone talk about a research lab? Perhaps a bit narrow-minded in my thought processes, but I visualize a bunch of doctors in lab coats hovering over microscopes recording their data in black-and-white composition notebooks. OK … maybe not quite like that, but I truly had somewhat of that scene going on in my mind. Until today …
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I seem to be in the confessing mood (see my first blog post), so here’s another one: Yes, Vance Taylor, I’m one of those nerds you alerted everyone about. In fact I actually DO find genetics exhilarating! Think about it: a four-letter alphabet — A, C, G, T — that spells a three-billion-letter instruction manual for who we are, what we do, and how we operate. And that instruction manual is stored, read, copied, broken and repaired in virtually every one of our body’s trillions of cells — nonstop, every moment of our lives.
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Ever feel like the dimmest bulb in the chandelier? Well, try sitting in the back row of an auditorium filled with world-renowned medical physicians and researchers (seriously, when it comes brain-power the MDA brought the thunder to their 2012 Clinical Conference). Not to say that I’m not a smart guy, but these people like to unwind by deciphering triplicate genetic code. (Where were these geniuses when I needed a biology tutor in college?)
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I met Dr. Sanjay Bidichandani last night at the welcome reception — quite possibly my favorite person that I’ve met so far — and he assured me that he would be able to translate all of the scientific talk that I was quite positive would be well over my head. I think he may have even said, “Believe me, you’ll be fine…”
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I’ve got two confessions. First, I just read Vance’s kick-off blog post ("Vegas Baby, Vegas!"). Uh oh -- he’s good! In Vegas speak, I’ve got a tough act to follow. They asked me to blog on the morning sessions at the conference, to give my take on the science and maybe offer some perspective for the non-science geeks among us. I’ve done a bit of science writing, but I’m not much of a speed-writer. I prefer to sand and buff my sentences, and let them develop a patina, like a nicely cured brie. No time for that at this meeting. I can’t help thinking about those hotel sculptors, who crank out beautiful centerpieces in minutes by taking a chain saw to a block of ice. I hope my blog posts don’t turn into a bunch of ice cubes.
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I attend numerous conferences and meetings, and each time I return with new ideas and information. But, as I pack my bag for MDA’s Clinical Conference, I find myself filled with a unique sense of anticipation and excitement. Why? Because we’ve gathered hundreds of researchers and clinicians in the field of neuromuscular disease, all of whom have carved time from their busy schedules to dedicate two-and-a-half days for focused discussions that will translate into improved medical care for those MDA serves
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When most people think of Las Vegas, attending a medical conference isn't exactly what comes to mind (I guess most people just aren’t into white smocks). However, this week I'm in “sin city” (along with my lovely wife) for the express purpose of attending the Muscular Dystrophy Association's 2012 Clinical Conference. It may not be the hottest thing on the strip, but bringing together hundreds of the world's greatest neurologists, cardiologists and pulmonologists to advance the treatment and eradication of neuromuscular diseases is its own kind of sexy.
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